Global PCD conference 2026 highlights
Did you miss the Global PCD conference in Montreal?
Co-organized by BEAT-PCD, PCD Foundation and ERN-Lung
Were you unable to attend the first Global PCD Conference in Montreal from August 19-22? Did you attend but need a refresher on some of the key topics discussed?
Global PCD Conference Chairs Heymut Omran, Univ.-prof. Dr med. MD (University Hospital Münster, Germany), Adam Shapiro, MD (McGill University Health Centre, Canada), and Amelia Shoemark, PhD (University of Dundee, UK) will lead us through the conference highlights: PCD biology, disease mechanisms, advances in clinical care, and much more.
Date/Time
Tuesday, 15 September @ 8:00 AM ET; 13h BST; 14h CEST
Registration
Registration link is available here
We hope you join us to reflect on the first ever Global PCD Conference, and look forward to seeing you at the second in Lisbon, October 6-10, 2027!
Stronger Together: Empowering PCD Patient Organisations Across Borders
October 2026 - PCD Awareness Campaign
Date: Wednesday 21 October 2026 at 6pm (CET time - Paris time)
Format: Online interactive webinar, 90 minutes
Participants: All patient organisations within BEAT-PCD Network
Session Chairs: Deepa Patel and Emilie Wattellier (BEAT-PCD WP7)
About the Seminar
Primary Ciliary Dyskinesia (PCD) is a rare, lifelong genetic condition that can have a significant impact on individuals and families from diagnosis throughout the different stages of life.
For people affected by PCD, patient organisations and support groups can provide an important source of peer connection, practical information, signposting and community support. Their role can extend from the time of diagnosis, through living with PCD and navigating healthcare services, to important life transitions such as adolescence, transition to adult care, family planning, education and employment.
Patient organisations can also play a broader role in the PCD community by helping to amplify the patient voice, raise awareness, facilitate connections between patients and healthcare professionals, and contribute to research and the development of future treatments.
However, establishing and maintaining a sustainable patient organisation can be challenging. Organisations may face issues including volunteer capacity, governance, succession planning, funding, communication, membership engagement, access to medical expertise and maintaining momentum over time.
There is an opportunity to learn from the experience of PCD patient organisations in different countries and from relevant patient organisations in other disease areas. Sharing practical examples and lessons learned can help organisations develop their own activities while identifying opportunities for greater international collaboration.
As part of the October PCD awareness campaign, this webinar will bring together patient-organisation leaders from different countries to share experiences, exchange practical approaches and explore how PCD support groups can become stronger, more sustainable and more empowered.
Session Aims
The session will:
Bring the international PCD patient-organisation community together to share practical experience, celebrate the value of patient organisations and identify opportunities for stronger, more sustainable and collaborative patient support.
Provide a platform for patient-organisation leaders to exchange best practice and for patients, families and healthcare professionals to learn how they can connect with and support these organisations.
Programme
18:00-18:05 - Welcome and introduction - Led by session chairs
18:05-18:10 - Why patient organisations matter - Short scene-setting: the patient journey, the role of peer support, information and empowerment, and the potential contribution of patient organisations to the wider PCD community
18:10-18:30 - Theme 1: Building a strong support organisation - Governance, board structure, medical/scientific advisors, roles and responsibilities, meetings, national/regional models, membership, volunteer management, succession planning
18:30-18:50 - Theme 2: Communication, engagement & visibility- Newsletters, social media, WhatsApp/online communities, websites, events, patient stories, videos, awareness campaigns, reaching newly diagnosed families and engaging younger generations
18:50-19:10 - Theme 3: Fundraising & sustainability - Membership fees, fundraising events, partnerships, grants, sponsorship, corporate relationships, volunteer capacity and maintaining long-term sustainability
19:10-19:20 - Patient organisations as partners for research & change - How organisations can contribute to research, patient registries, natural-history studies, clinical trials, research priorities and treatment development; examples from PCD and other rare diseases
19:20-19-30 - International Q&A & call to action - Audience questions, key takeaways, opportunities for collaboration and practical next steps
19:30 - Closing statement - Session chairs
Registration
PCD Support Group should receive an invitation to the webinar, if not please contact us!
PCD Patient Conference 2026
We're pleased to announce the 2026 PCD Patient Conference, taking place online over two interactive sessions:
Friday, 13 November 2026 | 6:00–8:00 pm (CET)
Topics: Research Updates & Fertility Panel Discussion
Saturday, 14 November 2026 | 9:00–11:00 am (CET)
Topics: Genetics & Daily life Panel discussion
Join patients, families, researchers, and healthcare professionals for the latest updates in PCD research, practical discussions, and opportunities to hear from experts and members of the PCD community.
Registration: follow the link
More information, including the full programme will be available soon.
We look forward to seeing you there!
PCD Expert Talk: Living with PCD study
For the latest results of the Living with PCD study from Andrea Fernandez Rodriguez and Myrona Goutaki.
Registration
Even link will be shared soon
Global PCD Conference 2027
Save the Date
The second Global PCD Conference jointly organized by BEAT-PCD, PCD Foundation and ERN-Lung will be held in Lisbon (Portugal) October 6-10th 2027!
More info to come!
BEAT-PCD Meeting at ERS Congress 2026
With the establishment of the Global PCD Conference, there will no longer be a separate BEAT-PCD research meeting held ahead of the European Respiratory Society (ERS) Congress. However, we would like to invite everyone attending the ERS Congress who is interested in BEAT-PCD activities to join our BEAT-PCD Management Committee Meeting on Saturday 5 September at 14:00 CET.
The meeting will provide an opportunity to hear about the latest achievements and ongoing activities across BEAT-PCD, learn more about current research projects, receive an update from our PCD patient partners, and discuss future priorities for the network.
In-person attendance is only possible in person and is open to ERS-registered participants.
Programme
14:00 – Short welcome
Amelia Shoemark and Myrona Goutaki
14:10 – Updates from BEAT-PCD Work Packages
Recent achievements and ongoing activities
15:10 – Short break
15:30 – Research project presentations
Three research presentations, each followed by discussion
Clinical management of upper airway disease in PCD: results from the EPIC-PCD study
Vasiliki GkatzouBiomarkers of infection and inflammation in PCD airways
Laura GardnerThird research presentation – to be confirmed
16:15 – Update from PCD Patient Partners
16:30 – Future outlook and closing
Amelia Shoemark and Myrona Goutaki
ERS Congress 2026
The European Respiratory Society (ERS) Congress an annual event that brings together the world's respiratory experts to showcase the latest advances in respiratory medicine and science will take place in Barcelona, Spain
Registration and information on the conference website
The theme for ERS Congress 2026 is:
United for better breathing: partnership between patients, clinicians and researchers
Co-creating care: patients as equal partners (Empowering patients to actively shape their care through shared decision-making and mutual respect)
Listening first: identifying and acting on unmet needs (Prioritising patient voices to uncover real-world challenges and guide meaningful change)
Discovering together: advancing science through collaborative research (uniting patients, clinicians, and researchers to promote a pipeline of research from discovery to improved respiratory health)
PCD Related content
A useful guide to PCD related content can be find in BEAT-PCD Newsletter 13.
Patient perspectives: ERS Congress 2026
Patient perspectives will be at the heart of the ERS Congress 2026. European Lung Foundation (ELF) will provide support to the ERS assemblies and session organisers to:
Understand how to include patient and carer perspectives in their sessions
Ensure the programme addresses the topics which are important to people living with a lung disease
How patient voices can shape the ERS Congress 2026
The European Lung Foundation (ELF) recently held a webinar on how patient voices can shape the ERS Congress 2026. To watch the event recording, visit the ELF website.
Global PCD conference 2026
Get ready for the inaugural Global PCD Conference, a premier international event focused on the science and clinical care of PCD. The conference will bring together researchers, clinicians, patients and advocacy groups from around the world to advance discovery, collaboration and innovation in PCD.
The conference website is live: https://onecau.se/pcdglobal2026.
Organized by PCD Foundation, BEAT-PCD & ERN-Lung
Registration
Registration is now open for the inaugural Global PCD Conference: Register here
Accommodations
The Global PCD Conference has reserved a block of rooms at Le Centre Sheraton Montreal Hotel. The hotel is a fully renovated, family-friendly hotel in Montreal, QC, that welcomes you with thoughtful amenities and a bustling location near the Bell Centre. The hotel is conveniently located approximately 20 minutes from the Montreal–Pierre Elliott Trudeau International Airport.
To book a room online, please follow the link to our reservation page. Reservations must be made by July 31th, 2026.
Le Centre Sheraton Montreal Hotel
1201 René-Lévesque Blvd W, Montreal, Quebec H3B 2L7, Canada
If you have any questions related to accommodations or any issues making your reservation at Le Centre Sheraton Montreal Hotel, please contact Alexa Lingris at alingris@pcdfoundation.org.
Mastering the new diagnostic pathway: the ERS/ATS clinical practice guideline for PCD
Overview
This one-hour webinar will provide a practical introduction to the newly published joint ERS/ATS evidence-based guideline for the diagnosis of primary ciliary dyskinesia (PCD) (Eur Respir J 2025;66:2500745). As most individuals with PCD remain undiagnosed despite the clear benefits of early diagnosis for both children and adults, this educational session aims to support clinicians in implementing the new guideline in routine practice.
Participants will gain an understanding of the updated diagnostic algorithm, which places genetic testing at the centre of the diagnostic pathway while integrating transmission electron microscopy, nasal nitric oxide measurement, high-speed video-microscopy, and immunofluorescence as complementary investigations. Through expert presentations, interactive clinical cases, and a panel discussion, attendees will learn how to recognise patients who should be referred for diagnostic testing, interpret the results and limitations of the core diagnostic investigations, and apply the guideline to complex clinical scenarios to guide decision-making.
The webinar, chaired by Adam Shapiro, will feature presentations by Amelia Shoemark, Amjad Horani, Thomas Ferkol, and Panayiotis Kouis, followed by a live question-and-answer session.
Registration and information on ERS Respiratory channel
World Bronchiectasis Day Question Time
On World Bronchiectasis Day at 12.00 BST/13.00 CEST the European Lung Foundation will hold a special Question Time webinar featuring a panel of experts, including physiotherapists and individuals living with bronchiectasis. The panel will explore the theme “Airway Clearance” by answering questions submitted by our Bronchiectasis Patient Advisory Group (PAG)and attendees.
Topics included:
What airway clearance is and why it is important for people with bronchiectasis
Different techniques and how people can find what works best for them
How airway clearance can support exercise and staying active
Practical advice for managing airway clearance in daily life
Resources and support available through ELF and EMBARC
This free webinar is intended for people living with bronchiectasis and their family members or caregivers. However, anyone who would like to learn more about the condition is welcome to attend.
More info and registration on ELF website
9th World Bronchiectasis Conference
Registration and information on the WBC 2026 website
Message from the organizers:
A decade on from the inaugural World Bronchiectasis Conference in Hannover (2016), our community returns to the city where this global movement began. Over these ten years, bronchiectasis has moved from the margins to the mainstream: international registries have transformed understanding of disease burden and phenotypes; updated guidelines and consensus statements have clarified standards of care; new clinical trials have tested anti‑inflammatory and anti‑infective strategies; airway clearance science and physiotherapy have evolved; and digital health, imaging and microbiome research are reshaping how we monitor, personalise and prevent exacerbations. The patient voice is now firmly embedded in research priorities and service design.
WBC 2026 will gather clinicians, scientists, allied health professionals, patient leaders and industry to translate this progress into better outcomes. Expect cutting‑edge sessions on treatable traits and endotypes, infection and NTM management, precision diagnostics, paediatrics and transition, physiotherapy and rehabilitation, real‑world data and AI‑enabled tools, as well as late‑breaking trials and implementation science. Hannover provides not only a symbolic homecoming but also a watershed moment to set the agenda for the next decade-accelerating therapeutic development, harmonising outcome measures and ensuring equitable access to high‑quality care worldwide.
We invite you to partner with us in Hannover, 24–27 June 2026, to advance the science, elevate clinical practice and improve the lives of people living with bronchiectasis.
Francesco Blasi, James Chalmers, Jessica Rademacher, Felix Ringshausen
WBC 2026 Organising Committee
Hannover, Germany
EMBARC x ELF Bronchiectasis Patient Conference 2026
The 6th annual Bronchiectasis Patient Conference will take place from 10:00 to 16:00 CET on 21 March 2026. The conference is an opportunity for anyone living with or interested in bronchiectasis to learn more about the disease and how to manage it. It is organised in collaboration with EMBARC and the ELF Bronchiectasis Patient Advisory Group (PAG).
A full programme with details of all talks and topics to be included will be published soon.
We will hear from people living with bronchiectasis and healthcare professionals. Attendees will have the opportunity to ask questions to the speakers and experts via the chat.
More info and registration here
PCD expert talks: Understanding natural variability in lung function: insights from the PROVALF-PCD cohort
What is this session about?
The PROVALF-PCD (Prospective Observational Multicentre Study on Variability of Lung Function in Stable PCD Patients) study is a multicentre, longitudinal project designed to better understand how lung function naturally changes over time in people with PCD. The cohort includes 252 patients recruited from 19 centres across 12 countries, making it one of the largest collaborative efforts in this rare disease. Over the course of the study, we collected over 1,000 FEV1 measurements from patients in stable state, during routine clinical follow-up, spanning a period of 15 months.
The study examined the extent and patterns of natural changes in lung function within each person, when these changes can be considered physiologically relevant, and what this might mean for disease monitoring, treatment decisions, and clinical trial design. This talk will discuss how PROVALF-PCD provides insights that are relevant for patients, in understanding their own health journeys, for clinicians, in shaping management strategies, and for researchers, in designing future studies.
About the speakers:
Bruna Rubbo is a senior lecturer at the University of Southampton. She co-chaired ‘BEAT-PCD COST Action’ WP 4 Outcome measures from 2017 to 2019 and currently chairs BEAT-PCD WP5 Clinical Outcome Measures. Her research focuses on the epidemiology of PCD, including improving diagnosis, understanding genotype–phenotype relationships, and evaluating lung function and clinical outcomes, with the aim of advancing patient care and developing robust outcome measures for both clinical practice and research.
ERS & ERN-LUNG Virtual school on rare lung diseases
This European Respiratory Society (ERS)/European Reference Network (ERN-LUNG) collaborative course will present the latest understanding and advice on the management of rare lung diseases. Due to the small number of people affected with rare lung diseases, diagnosis can be difficult and treatment options are limited.
This online course will provide an overview on how to diagnose and treat rare lung diseases, including interstitial lung diseases, pulmonary hypertension, cystic fibrosis, primary ciliary dyskinesia, non-cystic fibrosis, bronchiectasis, rare obstructive lung diseases, and rare thoracic cancers.
Participants will benefit from round table discussions, case-based sessions, and the opportunity to present their pre-recorded cases and discuss them with leading experts.
More info and registration: https://channel.ersnet.org/media-114630-virtual-school-on-rare-lung-diseases-2026
PCD Patient conference 2025
Join us for a virtual gathering of patients, caregivers, and healthcare professionals to learn, connect, and support one another in navigating life with Primary ciliary dyskinesia. Our conference will feature informative and interactive sessions and opportunities to engage with experts in the field. We will cover the latest research updates, living with PCD, treatments, nutrition and transition from childhood to adulthood with PCD. Don't miss out on this chance to come together as a community.
Registration
Follow the link to register here
Agenda
The program is now available here for download
Content
The presentations slides and agenda will be available ahead of the day and translated in additional langages (French, German and Spanish). Check our dedicated page for PCD patients conferences.
PCD expert talks: EPIC-PCD − focusing on the upper airways
What is this session about?
The EPIC-PCD (Ear-Nose-Throat Prospective International Cohort of Patients with PCD) study is an international initiative to better understand upper airway disease in PCD. Established by Prof Goutaki in 2020, EPIC-PCD currently includes over 500 patients of all ages from 15 centres in 11 countries. The study examines the manifestation of upper airway disease in different ages, its prognosis over lifetime, and its relationship with lower airway disease in patients with PCD. Integrated into routine clinical care, it collects standardised baseline and follow-up data both from clinical examinations and directly from patients or parents of children with PCD. The speakers will discuss the study’s setup, progress, key findings, and future plans.
About the speakers:
Myrona Goutaki is a professor of clinical epidemiology at the University of Bern. She is the principal investigator of the EPIC-PCD study and co-chair of BEAT-PCD. She also co-leads the Swiss PCD Registry and is the scientific coordinator of the Swiss rare disease registry. Her research focuses on the epidemiology of paediatric and rare respiratory diseases, with a particular emphasis on PCD. She leads several studies using both qualitative and quantitative approaches to address key questions raised by patients and the scientific community.
Vasiliki Gkatzou is a medical doctor with clinical experience in paediatrics and a master’s degree in biomedical engineering. She is currently a PhD candidate at the University of Bern and coordinates the EPIC-PCD study supervised by Prof Myrona Goutaki. Her research focuses on gathering valuable insights into the medical and surgical management of upper airway disease in patients with PCD.
Patient partnerships in PCD research
Lucy Dixon, volunteer and past chair of PCD support UK and member of the BEAT-PCD management committee, and Myrona Goutaki, researcher and co-chair of BEAT-PCD take the opportunity to discuss about partnerships between researchers and people living with PCD, as part of the PCD awareness month 2025.
Register here
Patient involvement is nowadays a focal point in health research. Although much progress has been made to set up a good framework and encourage active involvement and engagement of people with lived experiences in research, we still need to take further steps to achieve meaningful partnerships. In this webinar, the two speakers, who have collaborated on several projects, including the participatory Living with PCD study and an international survey on patient priorities for PCD research, discuss the value of patient engagement and involvement to the researchers and to the patient partners, share their experiences, and give advice on how to improve collaborations between patients and researchers and on selecting and maintaining patient partners in PCD research.
Target audience - People living with PCD and their family members who are interested to be actively involved in research and researchers who are interested to develop PCD projects with patient involvement and engagement
Live Translation
Please find a guide here on how to turn on live AI-translated subtitles in Zoom
PCD Annual Research Meeting 2025
The PCD Annual Research Meeting 2025 convenes researchers, clinicians, and healthcare professionals dedicated to Primary Ciliary Dyskinesia (PCD). Organized by BEAT-PCD and ERN-Lung, this meeting provides a valuable forum for sharing the latest advancements in PCD research, encompassing both fundamental science and clinical practice.
Registration
Registration for the PCD Annual Research Meeting 2025 is now open via our partner, Lena Events (click here to register)
The meeting will be followed by a social dinner. Reservations can be made on the registration page. Further details will be provided shortly before the event.
How to reach the venue
The meeting will take place at: Amsterdam UMC – VUmc (Vrije Universiteit Medical Center) De Boelelaan 1117, 1081 HV Amsterdam – Amstel-Zaal room
The venue is easily accessible by public transport:
Tram: line 24 → stop De Boelelaan / VU
Bus: lines 62, 242, 341, 346, 348, 358 → stop De Boelelaan / VU
Metro: lines M50, M51, M52 → stop Amsterdam Zuid
For any help regarding the route to take to get to the Amsterdam UMC, we suggest you use the official website for public transport in the Netherlands: https://9292.nl/en/
World Bronchiectasis Day - Question time webinar
To celebrate World Bronchiectasis Day 2025, EMBARC and the European Lung Foundation (ELF) are hosting another Bronchiectasis Question Time event - a free 1-hour Q&A webinar aimed at patients, their families and caregivers (although anyone interested in learning more about bronchiectasis is welcome to attend).
This year, we will be exploring the theme 'Educated and Empowered: how to take control of your bronchiectasis'
Participants will have the opportunity to submit their questions in advance (and live during the session via the chat function) and get advice from an international panel of bronchiectasis experts and people living with bronchiectasis. The event will be held in English with translated captions in multiple languages.
Event Details:
📅 Tuesday, 1 July 2025
🕒 15:30–16:45 CEST
📍 Online – Free Registration Required
For more details and to register, please click here: World Bronchiectasis Day - Question time webinar (ELF website)
ERC in PCD Expert Talk: AI and digital-automated tools for screening, diagnosis and characterization of PCD
What is this session about?
Within the ERS BEAT-PCD Clinical Research Collaboration, the Work Package 7 (WP7) “Improving PCD diagnosis” team systematically reviewed the literature to identify studies that used artificial intelligence (AI) and/or digital-automated applications to improve screening, diagnosis and characterization of PCD.
During this session, Dr Claire Jackson and Dr Panayiotis Kouis will present the key findings of this review and highlight other WP7 activities.
About the Speakers:
Dr Claire Jackson has developed cilia imaging and advanced nasal epithelial cell modelling and a bio-resource of rare airway samples at Southampton since 2007. She has contributed >35 papers, 40 conference abstracts and a book chapter (>2300 citations) in PCD, ciliated epithelial cell biology and airway microbial infection. Dr Jackson’s current research is funded by Great Ormond Street Hospital Charity, Allergy Asthma & Immunology Research Charity, LifeArc and European/Italian Space Agencies. Dr Jackson leads WP7 Work Packages — BEAT-PCD for the international ‘BEAT-PCD Clinical Research Collaboration’ network and has previously delivered expert Training — BEAT-PCD, and spoken at the British Thoracic Society Winter Meeting and University College London Rare Ciliopathies Symposium. She also supports patient education initiatives provided via PCD Support UK PCD Live!.
Dr Panayiotis Kouis is a visiting Lecturer and a member of the Respiratory Physiology Laboratory at the Medical School of the University of Cyprus. He has been involved in PCD diagnostic testing since his PhD studies, and he is now co-chairing the BEAT-PCD WP7. He has background in evidence synthesis methodologies such as systematic review, meta-analysis and cost-effectiveness analysis, and participated in the development and adaptation of guidelines in the field of PCD and elsewhere. Dr Kouis recently delivered an WP7 ERS task force collaborative project to develop PCD patient/carer information on nasal nitric oxide testing for clinic distribution and patient support groups, based on the newly published standards Nasal nitric oxide measurement in children for the diagnosis of primary ciliary dyskinesia: European Respiratory Society technical standard - PubMed. Panayiotis is currently developing multiple translations for wider clinical use in collaboration with patient support groups worldwide.
IPCDPN webinar: Measuring outcomes in PCD
We are excited to share details of the next IPCDPN webinar:
Measuring outcomes in PCD
Tue 29 Apr 2025 1:00 PM - 3:00 PM BST Online, Teams
Programme:
1:00-1:10 Welcome and interactive survey
1:10-1:45 The use of outcome measures in PCD research, Dr Bruna Rubbo
1:45-2:30 Outcome measures for airway clearance techniques in chronic suppurative lung disease, Dr Gemma Stanford
2:30-3:00 Discussion
International ERN-LUNG PCD Meeting 2025 - online streaming available
Dear Colleagues, dear Friends
It is with great pleasure that we welcome you to the II. International ERN-LUNG PCD Meeting in Naples. We are delighted to see so many of you have registered for this important occasion, reflecting the growing engagement and dedication within our community. Your presence underscores the collective commitment to advancing knowledge and collaboration in the field of primary ciliary dyskinesia (PCD).
This meeting is not just an opportunity to share the latest research and clinical insights but also a moment to strengthen our professional bonds and foster new collaborations. The diversity of expertise and the wealth of experience represented by our participants make this gathering particularly valuable, and we are excited for the discussions and exchanges that lie ahead.
We hope that you will find the program inspiring, the discussions fruitful, and the time spent in Naples both academically enriching and personally enjoyable.
For those, who cannot make it in person: The meeting will also be broadcast live via online streaming, allowing participants to join remotely from anywhere.
Below is the calendar with the access link for each day:
06/04/25 - https://www.itlavmeeting.it/Home/Iscrizione/82284310765
07/04/25 - https://www.itlavmeeting.it/Home/Iscrizione/86120925343
08/04/25 - https://www.itlavmeeting.it/Home/Iscrizione/88180746595
Simply enter your first name, last name, and email address to join the live session.
Links are also available in the info-section of the meeting web page https://pcdnaples2025.centercongressi.com/home.php
Looking forward to see you soon,
Heymut in behalf of the Organizing Committee
ERC in PCD Expert Talk: Genetics in PCD diagnosis – the BEAT-PCD CiliaVar and ClinGen collaboration
What is this session about?
We will hear about projects to improve PCD diagnostics by defining its underlying genetic causes. Two researchers involved in these developments will briefly overview the contribution of genetics to modern PCD diagnostics, and describe two important initiatives to improve genetic diagnostics: (1) the BEAT-PCD ClinGen collaboration which aims to better understand and curate the full complement of PCD genes and define what we consider a disease-causing variant; (2) CiliaVar, a freely accessible online catalogue of PCD-causing gene variants and their association with specific clinical features.
About the Speakers:
Hannah is a Professor of Molecular Medicine at University College London. Her research group uses PCD patient sequencing and functional studies to understand the molecular genetic basis of PCD, bronchiectasis and male infertility. Her lab develops PCD diagnostic gene panels and RNA-based genetic therapies for PCD. Hannah co-chairs the ClinGen ‘Motile Ciliopathy’ Expert Panel with Marie Legendre and is part of the BEAT-PCD Work Package 2 team working to develop the CiliaVar database. She is in the UK Cilia Network leadership team and is chair of Ciliopathy Alliance, interacting regularly with patient groups as a science advisor.
Mafalda is doing her PhD in the Mitchison Lab at University College London, where her research focuses on advancing the understanding of the genetic causes of PCD. Her work combines cell culture techniques and bioinformatics analyses to unravel the complex mechanisms underlying PCD. She has a background in variant and gene curation, developed through her MSc in Genomic Medicine at Imperial College London and her work experience at Genomics England and Veritas Genetics, where she analysed Next Generation Sequencing data for the diagnosis and screening of various inherited disorders.
Bronchiectasis Patient Conference 2025
The 5th annual Bronchiectasis Patient Conference will take place from 10:00 to 16:00 CET on 15 March 2025. The conference is an opportunity for anyone interested in bronchiectasis to learn more about the disease and how to manage it. It is organised in collaboration with EMBARC and European Lung Foundation Bronchiectasis Patient Advisory Group (PAG).
Registration and information (including programme) here
The event will cover topics including:
An overview of bronchiectasis
Managing bronchiectasis and long-term infections
Cross-infection risks for people with bronchiectasis
Physical activity and self-management
Am I getting worse or am I just the same?
Artificial Intelligence (AI) generated information about bronchiectasis
Latest research and findings from clinical trials
We will hear from people living with bronchiectasis and healthcare professionals. Attendees will have the opportunity to ask questions to the speakers and experts via the chat.
Virtual school on rare lung diseases 2025
This European Respiratory Society (ERS)/European Reference Network (ERN-LUNG) collaborative course will present the latest understanding and advice on the management of rare lung diseases. Due to the small number of people affected with rare lung diseases, diagnosis can be difficult and treatment options are limited.
This online course will provide an overview on how to diagnose and treat rare lung diseases, including interstitial lung diseases, pulmonary hypertension, cystic fibrosis, primary ciliary dyskinesia, non-cystic fibrosis, bronchiectasis, rare obstructive lung diseases, and rare thoracic cancers.
Participants will benefit from round table discussions, case-based sessions, and the opportunity to present their pre-recorded cases and discuss them with leading experts.
Information and registration: https://www.ersnet.org/events/virtual-school-on-rare-lung-diseases-2025/
PCD patient conference 2024
Friday, 29 November 2024 from 14:00 to 18:00 (CET)
The BEAT-PCD patient conference will take place online and is organised jointly by patients with PCD and their families, researchers and clinicians. We aim to provide up to date information on the basics of PCD, living with PCD, research updates, treatments for PCD as well as learning from others experiences of PCD. This conference provides an opportunity to meet other people with PCD and contact local patient organisations.
The agenda can be downloaded here
Registration is opened on the Eventbrite page (click here)
Instructions on how to turn on the automatic translation within Zoom is available (click here)
More information about this year and previous years patient conferences can be found on the dedicated page
PCD Annual Research Meeting 2024
The meeting will be live-streamed on the Lena Event page for pre-registered participants.
Industry supporters
Endorsements
7th World Bronchiectasis Conference
BEAT-PCD will be running a half day session on Primary Ciliary Dyskinesia at the 7th World Bronchiectasis Conference 2024. Along with the organizing committee, we invite you to join and contribute to the World Bronchiectasis Community meeting planned in Dundee from 4 to 6 July 2024. Register and Submit an abstract here
Welcome letter from James D. Chalmers, Chairman of the 7th WBC
Dear Colleagues & Friends,
It’s a great pleasure –as Chairperson of the 7thWorld Bronchiectasis Conference 2024 -to invite you to join and contribute to the World Bronchiectasis Community meeting planned in Dundee from 4 to 6 July 2024.
The last years have been amazing for our international community.
Bronchiectasis has emerged from its history as a neglected condition to now being a dynamic field experiencing rapid progress. New translational science ishelping to revealthe physiopathologicalmechanismsbehind the disease and identify new targets. EMBARC and National Registries have contributed to describing the epidemiology, providing us with precious insights into the natural history of the disease, its comorbidities,and its current management approachesacross different countries. Together we have set key priorities forresearchto improve the quality of life of patients.
The COVID-19 pandemic and the past several years of scientific progress have clearly placed respiratory tract infections at the centre of public health, clinical practice, and scientific debate, helping us to provide new instruments to prevent andtreat exacerbations and comorbidities.
Our Multidisciplinaryteams, including specialist nurses, physiotherapists and other healthcare professionals are improvingthe patient journey, in some countries where resources are being devoted to bronchiectasis, while in many countries we still have a long way to go to succeed in being included in the delivery of healthcare for bronchiectasis patients.
After years of repurposing therapies from COPD and cystic fibrosis, new therapies are in development specifically for bronchiectasis and therapeutic breakthroughs feel closer than ever. The omics revolution is now helping us in starting to breakthrough the heterogeneity of the disease as well as to understand the causesbehind the symptoms.
Bronchiectasis stands on the threshold of a new age of exciting science and therapeutic development.
With this exciting context, I invite you to participate and contribute to the next World Bronchiectasis Conference and work together with us to create a better future for our patients with bronchiectasis.
Yours Sincerely,
James D. Chalmers
ECR Symposium
Patient perspective: What’s needed for multidisciplinary PCD care?
What is this session about?
This is a panel discussion where we will hear from an adult with PCD and a parent of a child with PCD sharing their thoughts on "What's needed for multidisciplinary PCD care?". We encourage people from all backgrounds to join. Therewill be opportunities to raise questions, make comments and discuss.
About the Panel:
Emilie is a patient with PCD. She is 54 and discovered her pathology at the age of 45. Since then, Emilie has actively tried to understand better PCD, to try to manage it better. Since September 2022, she has been an active board member in the French association ADCP, and is currently in charge of research. Emilie is keen to participate personally also in research on PCD and try to devote some time to it, in addition to her full-time job at the European Commission, to being a mum of 2, to manage her PCD daily and above all to living a happy life!
Fiona is Mum to two adult children who both have (PCD). She chaired the PCD Support Group between 2005 and 2021 where she helped transform the care of patients with PCD in the UK and contributed to global change in diagnostics and management of PCD. She was awarded a British Empire Medal for raising awareness of PCD in the 2021 New Year’s Honours. Fiona also chaired the Respiratory Biomedical Research Patient Group at the Royal Brompton for many years. And continues to represent patients on the Respiratory GeCip for the 100k Genomes project, European Lung Foundation,British Lung Foundation, Bronchiectasis UK as well as being trustee of the Ciliopathy Alliance. Fiona has been a patient representative for a number of research projects and still take an active role in the following projects: Covid-19 and PCD, the CLEAR Trial and very recently EMIRATES – a focus group for producing leaflets for thyroid cancer patients. She also regularly speaks to students about living with a genetic condition.
Ciliopathy Alliance 2nd Webinar - Learn about Sight Loss Research in Ciliopathies
Join the Ciliopathy Alliance for their 2nd webinar on Monday, 3rd June 2024 from 1 p.m. to 2.30 p.m. to learn about:
The latest research into RP (Dr. Roly Megaw, University of Edinburgh)
The patient's perspective re sight loss research for Usher patients (Steve White, Cure Usher)
Register here and you will receive a confirmation email containing links on how to join the meeting.
ECR Symposium
Adult PCD Clinical Cases
What is this session about?
During this interactive session, you will hear several interesting adult PCD clinical cases presented by early career researchers. For each case speakers will provide details on the patient’s present history, past history, diagnostic testing, and more exciting facts leading to final diagnostic outcome. Throughout there will be opportunities to raise questions, make comments and discuss.
About the Expert Moderator:
Natalie Lorent works as a consultant in Respiratory Medicine/Clinical Infectiology at the University Hospitals Leuven where she coordinates the care for adults with bronchiectasis and primary ciliary dyskinesia. She is also heavily involved in CF care and has a special interest in mycobacterial infections. She is an active member of the BEAT-PCD network and the focal point for ERN-LUNG for bronchiectasis and PCD at UZ Leuven.
International ERN LUNG – PCD Meeting
The International ERN-LUNG PCD Meeting will take place in Nicosia, Cyprus between April 10th – 12th 2024.
The event is jointly organized by the University of Cyprus, the University of Münster, the Copenhagen University Hospital - Rigshospitalet and the PCD Clinical Trial Network. It will bring together scientists from across the world to share their advances in PCD diagnosis, clinical research, and care. Participation in the meeting and the workshops will be free of charge.
You can register here.
You can find the near final agenda here.
You can apply for a travel grant here.
You can click here to submit your abstract.
For any additional information, please contact kouis.panayiotis@ucy.ac.cy
ELF Bronchiectasis Patient Conference
The European Lung Foundation (ELF) Bronchiectasis Patient Conference will return on 23 March 2024, following the success of last year's event.
This free online event will be beneficial for professionals to attend and is open to anyone interested in learning more about bronchiectasis. It will provide insight into the latest clinical findings, treatment and research, alongside real-life patient stories, plus resources and information to help patients live their life well.
The conference has been developed with and supported by EMBARC, a pan-European network and the ELF Bronchiectasis Patient Advisory Group. A live transcription service will allow participants to generate captions in more than 50 languages.
Please promote this event to your network and to friends, relatives, family doctors, clinicians and anyone you feel would be interested in finding out more about bronchiectasis.
click here to register
nNO measurement in children for the diagnosis of PCD
ERS Webinar: Nasal nitric oxide measurement in children for the diagnosis of primary ciliary dyskinesia: a European Respiratory Society technical standard
Find out more and register
11 March, 2024 - Online - 17:00–18:00 CET
Chair: Dr Myrofora Goutaki (Bern, Switzerland)
Speakers: Dr Nicole Beydon (Paris, France), Prof. Dr Jane Lucas (Southampton, United Kingdom)
Fees: Free for ERS members / €10 for non-members
Find out more about becoming a member
Educational aims
In this session, we will present the ERS Technical Standard of the measurement of nNO in children. The session will provide all the necessary information for people wishing to develop the measurement of nNO in children suspected of PCD. It will also give tools on how to express and interpret results.
Topics
Describe the different techniques and methods used to measure nNO in children, their advantages and disadvantages.
Explain the effect of the environment on nNO measurement and how to deal with it.
Propose a standard report and explain how to interpret the results.
Target audience:
Clinicians
Laboratory technicians
Nurses performing the test
Respiratory scientists
Format
This webinar will include 45-minute of lectures, followed by a final round table discussion for 15 minutes.
Learning outcomes
After following this webinar, participants should be able to:
Set-up the measurement of nNO in their centre
Perform nNO measurement in children from the age of one year
Report and interpret the results
IPCDPN webinar: hot research topics
Join us for the next IPCDPN webinar to find out more about current research projects happening in the world of PCD!
13.00 - Introduction
13.05 - 'The latest in exercise research for people with PCD'
Anne Marie Lee, Associate Professor at Monash University, in Melbourne, Victoria (Australia)
13.35 - 'Assessing the effects of personalised airway clearance techniques in children with PCD'
Lynne Schofield, Paediatric PCD Physio and Clinical Doctoral Research Fellow. Leeds Teaching Hospitals and University of Sheffield (UK).
14.05 - 'Spring-cleaning the PCD airway: presentation of CLEAN-PCD results and discussion of geographical differences in standards of ACT'
Dr. Felix C. Ringshausen, Senior Physician, Hannover Medical School (Germany)
14.30 - 'Status of PCD physiotherapy in the USA'
Michael Davis, Associate Professor of Pediatrics, Riley Hospital for Children at Indiana School of Medicine (USA)
14.55 - Close